My daughter was born with 2 hemangiomas on either side of her head. One was flat and the size of a dime and the other got to be a little bigger than a grape. She spent 8-10 months on propranolol and after seeing no changes we removed the larger one when she was about 18 months old in Jan 2011.
In August 2011, we noticed a cyst type thing on her lower spine. It was flesh colored and raised and the skin looked permanently goose-bumped. Her pediatrician told us to not worry about it unless it started changing. She just turned 3 and at her 3 year appointment, we pointed out that it's now sort of red, it getting bigger, and is starting to cause problems because she's been bumping it and complaining that it hurts. (I think the pain is from it constantly being bumped). Her Ped referred us to a general surgeon who in turn had us get a sonogram because he wanted to make sure that the cyst wasn't attached to her spine. We got the sonogram results back today, and apparently it's another hemangioma. The surgeon said it's probably been dormant and for whatever reason has started to grow. He didn't indicate that it would get much bigger, but I'm worried because it's on her spine, and if it gets bigger, I assume it could press on the nerves.

So, my questions are-has anyone ever heard of a hemangioma being dormant and manifesting itself at some point later in life? Are hemangiomas on the spine (or in the fat/skin above the spine) cause for concern? Is there an official term for these dormant type of hemangiomas?

Hello, I would call this "delayed growth" would be a better way to describe it. I have heard of patients being treated with oral steroids early on (for other health issues, no sign of hemangiomas) and once off the steroid the hemangioma appeared at age 2. Likely the propranolol did delay the growth (appearance) of the hemangioma. Is is possible for them to do a biopsy to know for sure this is a hemangioma? It is important to monitor the growth. I would encourage you to seek an opinion from Vascular Birthmark Experts through this site.

She's having it removed on Tuesday, 8/7 so they will be biopsying it then. Her derm, Moise Levy, will be viewing it during surgery and then sending it off to a lab to determine exactly what it is. The official word from him is that, based on the sonogram, there is arterial and venous flow in and out of it, and it does in fact appear to be a hemangioma but with her age and history the results are atypical. I haven't been on this site in a while and I'm not sure where I go to consult the experts. Is it just through the "ask an expert" link under the resources tab?

My daughter's was on her hairline. She is 7 months old now, and it is barely noticeable. We treated it with Timolol 3 times a day from age 9 weeks to now. I posted result pics on this site just now. Go check them out! I know how scary it can be!

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